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Disabling symptoms since distal bicep repair surgery. Any suggestions?
Hello everyone, I have had some very debilitating symptoms for the past 6 weeks since undergoing a distal bicep repair surgery and desperately need your help. Prior to the surgery I was an active, pretty healthy 48 year old. The surgery was conducted under general anesthesia in which I was put on a ventilator. All indications are the surgery went well. I wasn’t worried about the surgery in the least, and had debated even getting it repaired as it didn’t hurt and wasn’t impacting my golf game. However, a day and a half after the surgery I got a very strange feeling that led to what I believed was a panic attack (I have no history of anxiety/panic so I wasn’t sure). Long story short after 5 hours of debilitating symptoms my wife drug me to the ER. Over the next week the symptoms never left and I had two more ER visits. For the first week and a half I never managed more than 2 hours of sleep a night due to the symptoms. For the past 6 weeks it has been a daily occurrence with only a short break in symptoms here and there. The best way to describe the symptoms is a rush of something akin to intense anxiety/panic that makes me feel sick and often leads to vomiting (especially early morning). However, my heart rate actually has plummeted into the low 50s over the past 6 weeks and never gets over about 62 even during the worst of the attacks. I bought an iWatch to monitor my heart rate and it is always low. I have lost 35 pounds in 6 weeks despite eating, and eating pretty normally the past week. I also get why I can beat describe as an altered state of consciousness, disorientation that comes and goes. I’ve tested negative for pheochromocytoma and even underwent a psychiatric evaluation which was completely normal. The psychiatrist even asked why someone would send me there as this was clearly a medical issue. Simply put, none of this is thought driven and I do not feel anxiety has anything to do with it. I’ve undergone extensive blood work which hasn’t shown cause, and the doctors are baffled. The endocrinologist I saw was sufficiently alarmed to refer me to Mayo, but my referral was rejected. At this point I can’t work, can barely function and am in a constant state of misery. Trazodone helps me get about 5 hours of sleep but I wake up at 4am and the symptoms start immediately. Any suggestions that I can take to my doctor would be so much appreciated!
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Hi Jennifer. My balance issues are much more minor than that. I’ve had them for a very long time and it is part of the reason I am so sensitive to medications (they mess up my vestibular system). But I am not having vertigo that bad. I’ve had a few vertigo attacks in my life that have been that bad, but it has been quite a few years since I’ve had a bad one. The dizziness I’ve had since surgery is lesser than that, and more of a head pressure type sensation.
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1 ReactionI appreciate the reply. My thyroid checked out ok so they don’t think it is Graves or any thyroid related issue.
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1 ReactionWhat a nightmare you are going through. I'm glad you are getting lots of guidance. I've had 4 joint replacement surgeries, and I agree that it could be meds related, at least in part. I had psychedelic and mood-changing reactions to Tramadol. I don't know if you are taking it, but it's often prescribed for pain after surgery. Also, I get dizzy, faintness, and queasy feelings when I am deficient in vitamin D3, which I am chronically, even though I live in sunny Southern California. Wishing you well.
Thank you for the kind wishes. I am soon undergoing a battery of tests to try to get to the bottom of this. Some symptoms have stabilized, some have improved but others have gotten worse. I’ve now got a pretty bad (sometimes very bad) headache for much of the day and I wake with a buzzing in my head, left ear pounding and roaring along with my head pulsing, and a terrible jittery and shaky feeling. This gets worse as the morning goes on until I am physically ill and vomiting. The suddenly it will get better or move into my chest (I know this sounds weird) where the symptoms feel more heart/gastro related. I think this is what is frustrating my doctor- the symptoms are just all over the place but at the same time mostly pretty severe. Sometimes it seems neurological, sometimes cardiovascular, sometimes hormonal…. I’ve been given a huge battery of tests for autoimmune markers which didn’t show much. The only blood work I have had that came back high was something called a complement total. Between that and my extreme weight loss over the past 7 weeks (despite eating a high calorie diet the past 3 weeks) has the doc sufficiently alarmed. I wasn’t able to get into Mayo but I do have an appointment next month at Iowa City hospitals so hopefully they can figure this out so I can get back to work and on with my life!
@stevetaylor721 No follow up for 14 days. Please let us know how u are. I agree w taking melatonin. And that trazadone is not the best for calming down.
Tha k you so much for asking. I am still plugging along but haven’t had any real improvements. I am still unable to go to work or do much except try to get through each minute of each day. I’ve had a lot of labs and testing done which has not pinpointed anything specific, unfortunately. I was able to get referred to Iowa City hospitals in 3 weeks, so I’m just trying to hold on until then and hope I get lucky and they find something tangible
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3 ReactionsHi @stevetaylor721. You had me at Coach! I come from a very sports minded family, and have a coaching husband. Many props to anyone who coaches (if that is indeed what your title stands for).
I'm Rachel, welcome to Connect. I combed back through your posts to get caught up and was sorry to see you still do not have any solid reasons for your health disturbances since having bicep surgery. It's awesome however that your bicep was repaired successfully.
You've had great support and advice here on Connect which is why it's such a wonderful community. I'd like to throw you a curve ball with a little something different. If you feel up to it, do you mind watching a video presentation that I've attached on Central Sensitization Syndrome (CSS)?
CSS is an upregulation of the central nervous system and sensory input system. CSS can be upregulated by traumatic events, surgeries, you can be born with it. It's tough to pin point as there are no tests to prove, just process of elimination.
https://www.youtube.com/watch?v=8defN4iIbhoAs you continue your search for answers, and visit Iowa City Hospital in three weeks, take a look at this video presentation from Dr. Sletten of the Mayo Clinic, and keep it in your back pocket in case nothing else seems to make sense.
I'm wishing you continued perseverance and hopefulness in your journey. You sound like you know how to stay positive, and that's what it takes sometimes, despite being tested.
I'll be curious to know your thoughts on the CSS video. Do you mind getting back to me?
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4 ReactionsI would like you to call Mayo Clinic on your own. I don’t know why your doctor was refused, but Mayo will make an appointment for anyone. They might have a back log, but you should get an appointment.
When you call, say you need appointment with …. Name the department. The person will ask you for some details to make sure you get the best doctor. Mayo is in Iowa, or call the main number in Rochester if you can get there. They see millions each year, there is no logical reason for turning you down.
Please make an effort on your own wo your doctor. As they work as a team, if first doctor can’t help, you will be referred to another. I pray for you getting the best help possible.
Thank you for the reply! Mayo actually called me after my doctors referral and took my information, then sent me a link for electronic paperwork to fill out. I did so, then a few days later got an automated email saying my referral had been reviewed and unfortunately they couldn’t offer me an appointment at this time due to their being at max capacity. One of my doctors told me to apply again so I did so myself. I got another call back and they started going over the process with me on the phone but noticed I had already had a doctor’s referral reviewed/rejected and that their process is to wait a year until you can apply again. I think the problem was since there is no diagnosis yet, I had to be referred to internal medicine and they are very busy. I was told I could get a referral to a specialist if I get a diagnosis, etc. I think they are just really backed up right now with cases and are at max capacity.
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1 ReactionThat is tragic. I'm so sorry for that. I wish Mayo would reach out again and decide that a year in hell is too long for you.